Guilt, IBD, and Our Loved Ones

Oftentimes, when a person is diagnosed with Crohn’s Disease or ulcerative colitis, they need a lot of care. Not always, but a good amount of the time especially until a treatment plan is implemented. Many IBD patients need help getting to doctor’s appointments, going through procedures and tests, while they are in the hospital, dressing changes, making phone calls to insurance companies or doctors, being able to shower/clean themselves up, recovering from surgery or making something to eat.

The fact that those people who suffer from severe inflammatory bowel disease are usually not able to hold a full time job creates a lot of financial dependency as well.

This causes many IBD sufferers to feel guilty or like they are a burden on their loved ones.

Regardless if their family/friends are making them feel that way or not… it is something most people can’t help but feel when they are so reliant on someone else for even basic things.

Even though so many IBD patients are guilt ridden, I think a lot of our loved ones are also. I know many parents of children with Crohn’s Disease or ulcerative colitis feel like a failure for not being able to ease their child’s suffering. As you can imagine, it can make a person feel helpless to watch a someone you love and who you are supposed to protect suffer when there is very little you can do about it.

Siblings may also feel guilty about being able to do things that their brother/sister is missing out on. It may raise the question “Why not me?” It may also cause anger towards that sibling if IBD gets in the way of vacations, family events, and other plans. Feeling anger towards someone you rationally know cannot control the circumstances might cause guilt also. It could leave someone wondering why they are not able to control their anger/frustration.

Spouses or partners of IBD sufferers often do feel that helpless feeling that parents experience.

In addition, they also have to pick up the slack given their other half is not able to help out at that moment. It is obviously different for every couple and family, but that could mean the healthy partner needing to spend the majority of their time working to make up for only having one income. It could also mean having to balance work and children; leaving that person to feel badly that they can’t be present in the hospital or at home while their significant other is struggling so much.

There are a million reasons why guilt is so prevalent among those affected with inflammatory bowel disease and their loved ones. Even though it is hard to talk about, the more we can get it out in the open, the more we might be able to start to alleviate some of the internal feelings so many of us experience daily. Hearing “you have no reason to feel guilty. We love you and we are a family. That is what families do for each other” may not make my guilt disappear but hearing it makes me feel good for at least that moment. For caregivers or loved ones of someone suffering from Crohn’s Disease or ulcerative colitis, finding other people to talk to might be helpful. I know it can be difficult to explain to the person with the disease how much their illness is impacting your mental health and life so I think finding a support group (either online or in person) meant for caregivers could be therapeutic.

Everyone copes differently but please know that while you have no reason in the world to feel like a burden on your loved ones, I fully understand why you may be riddled with guilt.

I am that way and I hate it. But then I also think, if I didn’t care about how my disease was impacting the people I love most in the entire world, what kind of person would I be? It is only natural. Your reaction to so many of the circumstances that an IBD patient experiences is incredibly understandable and “normal.” Never forget that. So many people get it and are in your shoes. It is good to get it out… either with other people in person, online, or even writing it in a journal. Expunging some of those thoughts might help for a few minutes at least. That goes for loves ones affected also.

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Comments

I feel quilt everyday not only with my husband but my friends we have plans and I have to cancel all the time they say they understand and they don’t mind but I still feel useless and alone and like I’m a big disappointment to everyone in my life I do not know how to tell if they are being honest that they understand or if their saying what they believe I want to hear. It puts a big strain on my marriage we make plans for date night and last minute I cannot go or like the other day we went to eat and halfway through we had to leave so I don’t know how to live with this guilt of letting everyone down

First off, we are so glad to have you here as a part of our community so that you can connect with others who are going through similar difficulties as you and hopefully find the support that you deserve. Please know that you can come here any time to find extra support and info!

What you are going through is very difficult to manage and you should not feel like a burden to anyone! Many community members find it helpful to find local options, such as counselors and support groups. If you’re interested, check out this link to find resources near you: http://www.ccfa.org/living-with-crohns-colitis/find-a-support-group/.